One of the highlights of the trip was a personal tour we took of New Orleans and, in particular, the Lower 9th Ward that was devastated by Hurricane Katrina. As Ann and I have devoted our careers to trying to serve people in need, we were most interested in seeing how people are coping now, nearly six years after the crisis precipitated by the costliest natural disaster in U.S. history, which destroyed homes and killed and injured some of the city’s most vulnerable citizens.

Our tour guide was a local resident, a relative of our hotel’s concierge. Learning that we were visiting the city to speak to educators, our guide made sure one of our stops was to the Dr. King Charter School for Science and Technology in the Lower 9th. As a kindergarten through 9th grade school, most of the students at this school were very young when Katrina hit the city, and their experiences during the crisis will likely affect them throughout their lives.

We were heartened by the exceptional work the Dr. King School faculty is doing to try to prepare these students for success. But we were also dismayed to see the incredible needs that this school has, and to see how difficult it is to implement ideal teaching methods (as we were discussing at the conference) when students are missing basic resources, in terms of adequate food, classroom supplies, and so forth.

“We believe that every student may not learn on the same day or in the same way, but every student can indeed learn,” is the school’s philosophy and one which perfectly captures what this school is trying to do.

While our primary purpose for visiting New Orleans was to teach and learn at an academic educational conference, we were thankful to also have the opportunity to learn from the city’s residents, in particular our wonderful guide, Mr. Manuel Sims, and his family.

I encourage you to take the time to learn about the world around you, and particularly how it impacts our people in the greatest need. If you have the ability, please consider helping provide support for the Dr. King School, or the many similar schools and organizations across our country and our world.

I was very excited to present my work with Patricia Fennell in November at the Ohio Center for Autism and Low Incidence (OCALI) annual conference. The first part of the 75-minute presentation was an overview of the Fennell Four-Phase Model, while the second part was a discussion of how I apply the model when working with families whose children and adolescents have autism. My work is done through the Hench Autism Studies Program at Defiance College in northwest Ohio.

How FFPM Relates to the Autism Experience

The capacity-filled room, with over 50 people, was a mixture of professionals, educators, and family members. It was the family members who seemed to connect the most with Patricia’s model, especially Phase 3, Resolution, which is to make meaning of their situation. I say this because as I explained the “dark night of the soul,” numerous parents nodded their heads in agreement with what I was saying — that at some point a family has to come to grips with their situation and decide what they are going to do about it. After making their decision, then they can move into Phase 4, Integration, making the meaning a part of their lives.

Next, I talked about how I work with families to help them and their adolescent children make the transition to adulthood. As an introduction to the application of the treatment model, I used a story written by Emily Kingsley titled, “Welcome to Holland.” Her story uses the analogy that pregnancy and childbirth is like preparing for an overseas trip to Rome. The problem was that when she gave birth to a child with Down syndrome, she equated it to the plane unexpectedly landing in Holland (analogous to Phase 1, Crisis). She goes on to explain her shock at what she thought was a terrible mistake. Nevertheless, over time she has come to appreciate what Holland has to offer (Phase 4). To me, this story illustrates how Emily had moved through the Fennell Four-Phase Model (FFPM).

Application of FFPM at Defiance College

Then I explained how FFPM is being applied to a classroom on the Defiance College campus that is administered in partnership with the Defiance City Schools. At this time, there are five adolescent men in the program, which uses the college campus as a setting for them to learn independent living skills. The goal is to prepare them for when they will age out of special education services when they turn 22 years old. As I work with the young men’s families, I realize that they have to make meaning of what their adolescents are capable of doing work-wise and how much autonomy they can handle. The “dark night of the soul” for some of the families is having to recognize that their children are chronologically becoming adults and need to reach their potential in the social and communication skills needed for functioning in society. Also, families start to face the fact that parents will not always be there to protect and care for their children and that they need to plan for the future.

Using the Fennell Four Phase Treatment model, I can help families go back to Phase 2, Stabilization, and collect information about programs in order to set goals for their children and themselves. Through a parent group, they can share their stories and be encouraged by other parents who have gone through the transition to adulthood. Finally, they can reframe how they see their future and integrate their plan into their lives.

The presentation was well received and many people talked with me after it was over about how the Fennell Four-Phase Model could be applied to their lives. I have learned so much from presenting with Patricia about how to help families systematically work through the daunting task of raising their children with autism so that they can be empowered to have their children reach their full potential when become young adults.

Dr. Fred Coulter is an associate professor at Defiance College in Defiance, Ohio. In addition to his faculty responsibilities, he is the Parent Partnership Coordinator for the Hench Autism Studies Program. He can be reached at autism@defiance.edu.

My colleagues Ann Fantauzzi and Paula Leitz and I have become increasingly concerned about this situation as we personally see the impact that chronic illness has on the education of young people we know through our professions. Ann is a former teacher and now a teacher mentor, Paula is a professor focusing on teacher training, and I treat a number of youth with chronic conditions, including cancer and fibromyalgia, in my clinical practice.

One of the biggest problems we see is that the school system is well accustomed to accommodating children with acute and/or short-term disabilities, like broken arms or legs, and traditional disabilities, like visual or auditory impairments. But they don’t do as well accommodating students with chronic relapsing-remitting conditions like cancer, multiple sclerosis or chronic fatigue syndrome, for example.

Although federal disability laws require schools to accommodate students with disabilities, we have found that school personnel, including administrators, teachers, principals and others, often need to be educated about the unique nature of chronic relapsing-remitting conditions. It can be confusing to see a student alter between periods of relatively good health and extreme weakness and disability, and the flexibility required to accommodate these students can be difficult to achieve in the stressed American school system.

What seems to work best in these cases is a combination of established pedagogical techniques, notably differentiated instruction, and chronic illness models, such as the Fennell Four-Phase Model.

Chronic illness models, including the Fennell Four-Phase Model (FFPM), address the universe of issues and concerns facing students and families with chronic conditions. FFPM outlines Four Phases that people commonly pass through as they learn to incorporate their altered physical abilities or psychological outlook into their personality and lifestyle.

Differentiated instruction is designed to accommodate the varying learning needs of students, whether they are gifted, learning disabled, chronically ill or typical. Differentiation allows teachers to provide high-quality learning opportunities while engaging each class member at his or her own level. Differentiation is also validating for students. It presents curriculum in a way that is relevant to their lives and helps them make connections between concepts, which in turn helps them to retain new ideas.

Overall, differentiated instruction gives the student more control over their own work because it is set up cooperatively with the teacher, and provides educators a greater sense of management and choice of outcomes for individual assignments.

By blending the FFPM approach with differentiated instruction, educators can develop individualized approaches to teaching students with chronic conditions that meet the students “where they are.” By using FFPM to take into consideration the medical, social, familial and psychological situation the student is facing, educators can use differentiated instruction to develop curriculum and assignments that are relevant to the student’s life, interests and abilities.

We’ve found that combining these approaches offers students a greater opportunity to maintain their education while coping with the relapsing/remitting nature of chronic illness.

As more students come to school with chronic conditions like diabetes, asthma, autism, and autoimmune diseases, as well as diseases precipitated by the rise in childhood obesity, this issue will grow in importance. A recent study in JAMA reported that chronic illness in young children — ages 2 to 8 — doubled in just 12 years, to 1 in 4 children in 2006, up from 1 in 8 in 1994. Students with chronic conditions are at higher risk for school absenteeism and drop-out. In addition, dropouts are more likely to suffer from illness or disability in adulthood.

Clearly, chronic illness has serious impacts on schools, teachers, families and students, as well as our nation. It’s crucial that we find solutions to the problem of chronic illness and student absenteeism and dropout.

For more information about the rise in childhood chronic illness, see:

New York Times

WebMD